Five-year-old Harley Bond forgot his mom and dad after he was diagnosed with Sanfilippo syndrome when he was just three. But Harley, with a rare type of dementia, can finally recognise his parents again.
Sanfilippo syndrome is a rare genetic condition that causes fatal brain damage. It is a type of childhood dementia and most patients never reach adulthood. Harley’s parents Wayne Bond and Emma Siddal were heartbroken when he stopped recognizing them and calling them mommy and daddy. But he’s now had a chip implanted in his head to help him recover. The chip releases small quantities of a missing enzyme that causes symptoms to get worse. Harley is one among the 22 children was enrolled on a new clinical trial at Great Ormond Street Hospital.
“It was heartbreaking in the months he couldn’t recognise us, he struggled to make eye contact and didn’t call us mum and dad. The trial is doing well, and it’s giving us a little bit of hope for the future,” said Emma.
Harley was diagnosed with Sanfilippo Syndrome type B in 2016. Despite him developing well in the first few months of his life, his parents started to worry as he kept getting infections and colds, and his speech started to go back when he was three. The little boy would often stop breathing momentarily in the night, after developing sleep apnoea from the condition. Thus, the parents decided to put him forward for the experimental treatment in 2017.
The CEO of one drug giant Allievex, Thomas Mathers, said: “We have a device that is implanted into the child’s head which releases a synthetic version of the missing enzyme directly into the brain.”
The trial is being offered by US pharmaceutical companies and is an enzyme replacement therapy which delivers the missing enzyme directly to the brain thus bypassing the blood-brain barrier. They facilitate the device, track his progress and keep on top of his condition.
Source: Times of India, Mirror.